The North American Cystic Fibrosis Conference (NACFC) is the largest event of its kind, bringing together physicians, nurses, researchers, multidisciplinary healthcare providers, and others connected to the delivery of care to those with cystic fibrosis. This year’s 33rd NACFC took place from October 31st to November 2nd, 2019, in Nashville, Tennessee (USA) and was attended by over 5,000 delegates. With representation from over 40 countries, the scope of the conference extends well beyond North America, demonstrating the international effort to fight this disease.
The NACFC provides an opportunity to learn about the latest research findings, medications and treatments, new strategies to treat the underlying cause of CF and offers important networking opportunities for information exchange and sharing of best practices. This exchange of ideas can lead to partnerships and help move research and initiatives forward. Many researchers and trainees from Canada presented their CF Canada-funded work at the conference to large, international audiences.
Along with the formal programming offered at the NACFC, Cystic Fibrosis Canada hosted additional meetings with the Canadian community of delegates. The purpose of these meetings was to support and promote the national network of CF caregivers, and to provide education and information in an exclusively Canadian context.
The meeting of the Cystic Fibrosis Canada Nursing Advisory Group (CFCNAG) was attended by CF clinic nurses and coordinators from across Canada. Presentations and discussion topics included Social Media: Friend or Foe; PFTs Explained: What Numbers Mean to the Clinic and Patients; Aquagenic Palmoplantar Keratoderma in CF; along with a presentation on the Canadian CF Registry.
Cystic Fibrosis Canada also hosted the highly-anticipated Canadian Clinics Meeting which is attended by Clinicians and Researchers from across Canada. This year’s meeting provided networking opportunities for participants, and a chance for Cystic Fibrosis Canada to connect with all those who provide care to, or conduct research on behalf of, those with CF. Presentations at this year’s Canadian Clinics Meeting focused on an update on CF Canada’s Clinical Trial Network, CF CanACT and its growth in the past year; a CF Annual update on Adherence and Burden of Illness, along with a presentation about Survival and Epidemiology in Cystic Fibrosis.
Also during this year’s NACFC , Cystic Fibrosis Canada met with other organizations focused on the care and treatment of CF, including from the United States, Australia, the United Kingdom and several European countries. These meetings highlighted the relationships that Cystic Fibrosis Canada has around the world, and our shared interest in improving lives for people living with CF in Canada and beyond.
By providing funding to each clinic, through the Clinic Incentive Grant program, Cystic Fibrosis Canada is able to ensure that Canadian CF Healthcare Providers are able to attend this important conference, ensuring that knowledge remains current and focused, and that all those who deliver care have access to the latest information about all aspects of CF care.
Kelly Grover, President and CEO at Cystic Fibrosis Canada provided additional information about important meetings she had with other organisations’ CEOs and CF drug manufacturers on our most recent Facebook Live (you can watch it here).Kelly noted: “Our meetings with international groups helped me understand what worked and what didn’t work with them regarding getting access to medications. Putting the pressure on government and manufacturers keeps the momentum going. There is also a lot of work that needs to be done behind the scenes, meetings with the bureaucrats, Health Canada and PMBRD and others. We know that our top priority remains getting access to drugs and fixing the system. We are applying pressure on Vertex, the manufacturer of Trikafta to take the triple forward to Health Canada for approval. People with CF can’t wait.”
We would like to express our gratitude to Mylan, Vertex Pharmaceutical, Horizon Therapeutics, MVW Nutritionals and Corbus Pharma for sponsoring the Canadian Clinics Meeting at this 33rd edition of the North American CF Conference.
The 2020 North American Cystic Fibrosis Conference will take place October 22-24, 2020 in Phoenix, Arizona.